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by Shannon Penrod

When A Child Dies From Autism…

Last week, on Mother’s Day, Mikaela Lynch’s parents experienced a nightmare that didn’t end.  Mikaela, a nine-year old with Autism, went missing.  For four days volunteers, family members and friends of the family searched for her.  During that Mikaela Lynchunbelievably difficult time, Mikaela’s parents would have been told that their child did not qualify for an “Amber Alert”, which would have mobilized more help and created more media coverage.  Amber Alerts can only be used when there is evidence that the child has been abducted. Children with Autism who are known to “elope” do not fit that criterion, despite the fact that they may be facing life threatening challenges.

The Lynch family was also subject to some negative media barbs wondering why they hadn’t watched their child more closely. As if you can ever watch a child with Autism who elopes closely enough…as if these poor parents could transcend the human necessity of blinking, getting a drink of water or simply looking away for a split second.

I wish there were a happy ending to this story, that Mikaela had been found alive and that her parents could have sighed with relief and held their child in their arms, smelled her hair and felt her breathe.  That isn’t the end to this story.  Mikaela’s body was found on Wednesday, in a nearby creek.  For the Lynch family all that is left is to mourn.  For the rest of us, we have the responsibility to learn from this tragedy and hopefully prevent the next one…because if we don’t, more children with Autism will die.

I know what you’re thinking.  Autism isn’t fatal.  Children don’t die of Autism.  I hear this a lot.  When someone tries to explain to me why there are more children affected with Autism than Cancer, AIDS and Juvenile Diabetes COMBINED but it still receives only a small percentage of the funding these other medical issues garner, this is often the excuse I hear.  “Autism can be devastating to a family, but let’s face it…it’s not fatal.”

Tell that to Mikaela Lynch’s parents.

This isn’t a question of bad parenting.  A recent study estimated that over 50% of children on the Autism Spectrum will at some time engage in something called “elopement.”  No, they aren’t talking about running off to Niagara Falls to get married.  They are talking about when a child runs or walks away without regard to safety or rules.  Every parent who has ever had a toddler knows what this looks like – the child just takes off.  It’s scary for any parent, at any age.  Imagine for a moment what it would be like if your child never grew out of that behavior? Imagine feeling as though you could never let your guard down, not now, not ever.  It is unimaginable, isn’t it?  For a parent with a child on the spectrum it can feel that way sometimes.

The horrible truth none of us likes to think about is that it is impossible to watch our children 24 hours a day, 7 days a week.  We can try, we can do our level best, but it is impossible.  Every year we hear about more children with Autism who go missing from their homes.  Some are found safe, many are not.  What follows is astonishing to me.  As in the case of the Lynch’s, the media and the public often point fingers at the parents.  If they knew their child was an eloper, why didn’t they keep them safe?  This is the rationale of someone who doesn’t want to face facts.  Until we make sure that all families facing these issues get help and support, we are ALL responsible.

The good news is there is support we can give families to help stop their children from eloping.  It takes time, and systems have to be put in place to keep the child safe while they are getting the proper intervention.  It takes money.  It takes trained specialists.  It isn’t something an exhausted parent can do by themselves.  We need to stop acting like they can.

If you or someone you know has a child who elopes, don’t wait and hope that it will get better.  There are organizations that can help you.    Call your local Autism Society and ask for help.  Contact a TACA parent mentor.  Apply for an emergency grant from Autism Care and Treatment Today!  Don’t wait.

If you are a grateful parent of a well child, and you are able to use your restroom, or step into the kitchen, or take a phone call without fear of losing your child forever, please, please, spread the word and support organizations such as the ones I listed above.

Lastly, send a loving thought to the Lynch family.  Their loss is immeasurable.

Shannon Penrod is the mother of a nine-year-old with Autism.  She hosts Autism Live, an interactive web show devoted to giving free information about resources and solutions in the Autism Community.  Ms. Penrod makes the choice in her writings to capitalize the “A” in Autism, despite the fact that it is not grammatically correct.  In her words, “Trust me, when someone tells you that your kid has Autism…it’s a capital A.”

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Teachers are my heroes.  Okay, not all of them.  There are some people who should not be teachers.  If you’ve been watching the news lately this has been clearly brought home.  But, in my experience, the vast majority of people who dedicate themselves to educating our children are passionate, caring people who genuinely care about enriching children’s lives.  But even great teachers need good support and training or they can’t be truly effective in today’s classroom.

As a parent of a child with an Autism Spectrum Disorder, I have been enraged, saddened and horrified by some of the stories of how teachers have been attempting to cope with the ever-growing presence of Autism in their classrooms.  In December there was the mortifying story of the teacher who placed a fourth grader with Autism into a duffel bag as form of punishment for his challenging behaviors.  The mother was called to the school and discovered her son…in a duffel bag.  The good news is the child was alive.  We could spend an eternity talking about all the things that are wrong with putting a child into a duffel bag for any reason, but I think we have to stop for a moment and think about how you arrive at thinking a duffel bag is a punishment solution.  It is an epic example of not having the skills, tools or training to know how to cope with challenging behavior.  With only a small amount of training and support that teacher could have known how to safely and effectively redirect that child’s behavior.

Even more recently there was the case of the teacher in Riverside County who was sending a student with Autism into a cardboard box as a punishment for his challenging behaviors.  The media covered the story and parents were appalled.  A cardboard box…really?  The school responded and while they did not defend the teacher, they defended the cardboard boxes.  The school has tried to create “safe environments” for students with sensory issues; a quiet place where they can take a moment to collect themselves.  This allows a child to regulate their states – before things get to a boiling point.  It is supposed to be something that prevents challenging behavior.  In order to work properly it has to be used before the challenging behavior occurs.  The teacher was not properly trained so she used it as a punishment after the challenging behavior occurred.  The exact opposite of how it was supposed to be used.  When a quiet place is used correctly you will see a dramatic decrease in challenging behavior.  It is a very specific intervention for a very specific type of behavior.  Because the teacher was doing the intervention wrong the student was engaging in MORE challenging behavior!  He needed a break and the only way he could get one was by misbehaving.  Talk about a mess.  Now you’ve got a child misbehaving, sitting in a box and there is no learning happening, all because the teacher wasn’t trained properly.  This is heart breaking to me as a parent because the fix is so easy, and had the teacher carried out this intervention properly her whole classroom would have run differently.

I look at the news and I hear the stories of districts spending money on “scream rooms” and other barbaric concepts simply to cope with challenging behavior.  It makes me crazy…as a parent, as a teacher, as a tax payer, as a person.  First of all I want to ask the Dr. Phil question…How’s that working for you?  If you put a child in a scream room and the child’s tantrums don’t decrease then you really haven’t helped that child, you just found a way to isolate them.  Wouldn’t it be better to give our teachers the tools and information to deal effectively with challenging behavior so ALL of our kids can get back to the business of learning?

One of the people I respect the most in this world, Dr. Adel Najdowski, is about to give a free webinar for teachers on how to effectively deal with challenging behavior in the classroom.  It’s free.  It’s online so there are no travel costs.  If you are a teacher who wants to do better I hope you will attend.  If you know a teacher who wants to do better I hope you will invite them.  If you are a parent I hope you will invite your child’s teacher, their principal and their school district.  If we truly want to educate our children we have to educate ourselves and our teachers.  Here is the flyer for the webinar, spread it around.  No child should be in a duffel bag, a cardboard box or a scream room.  Let’s get them in the classroom LEARNING!  If for some reason you can’t see the flyer contact support@skillsglobal.com to reserve a spot for the webinar.

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By Shannon Penrod

Just when I think I have the food thing figured out I hear God laughing again.  He laughs at me a lot.  I eat really healthy, my child eats really healthy, I can’t speak for my husband but let’s just say he eats healthier now than he ever has and leave it at that.  My child willing eats vegetables, even requests them, so I must be doing something right.  Still….I read and wonder.  I am religious about having my son on a GFCF diet (Gluten Free/casein Free for those of you outside the Autism community), he is also free of sugar and artificial sweeteners.  This is not a some time thing, it’s an all the time thing.  I’m the crazy woman at the birthday party with the weird-looking cupcake and the sliced beets on my kid’s pizza.  So you would think that I am crazy organic too and great friends with a group of sustainable farmers.  Yeah…not so much.

I don’t know if the rest of you have noticed, but organic stuff is expensive.  I’m talking EXPENSIVE!  I used to care more about organic before the whole Autism thing came to live at my house.  But Autism is even more expensive than organic vegetables so it won the fist fight.  Now I’m thinking that may have been a bad choice.  A new study has come out that suggests that ADHD may be linked to pesticides.  Apparently pesticides are designed to disrupt something in the bug’s neurotransmitter system.  I didn’t know that, I thought it just killed them.  That probably sounds stupid, but I never thought about it before.  I just figured it choked the bugs somehow that wasn’t great but wasn’t all that harmful to humans.  You’re talking to the woman who used to run into the fog made by the DDT truck when she was a child.  Those pesticides probably killed the neurotransmitters in my brain that allow for higher thinking about pesticides.  I digress.

If this pesticide disrupts the bugs neurotransmitters and we eat vegetables that are sprayed with it doesn’t it stand to reason that we would see a BUNCH of people having neurotransmitter issues?  Oh, yeah, we have. Hmmmm.  How about that skyrocketing rate of Autism, ADD, ADHD,  Depression, BiPolar disorders and the list goes on.  So I am arranging to have an organic farm co-op bring us a box of food every week.  I don’t see how I can’t.  It’s not even that expensive, maybe $10 more a week than I would have spent, but I would have spent that in gas driving to 3 different stores.  It’s an adventure.  I’ll let you know how it goes!

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by Shannon Penrod

Well the verdict is in and I don’t agree.  James Durbin won’t be the winner of American Idol 2011 but there are some contests that are even more important than Idol and as a proud Autism Mom I know that James Durbin has already won them. 

James Durbin

Not to take anything away from the other contestants, I’m sure they have all overcome some adversity to get where they are, but I know first hand that it can’t compare to what James has surmounted.  He is a true champion.

He stood in tears at the end and proudly said that he had done what he had come to do.  I think that’s true, James, but I don’t think it was to give metal a chance.  Okay, maybe that was part of it, but you also gave a lot of us hope.  To watch you sing every week, to watch you own that stage lifted my heart and reminded me that all things are possible.  You helped me and thousands of other mothers remember that dreams don’t have to be deferred by Autism.  You were brilliant, and the “Autism thing” was incidental, a foot note…irrelevent…what a lovely gift. I thank you from the bottom of my heart.

James Durbin, you are my American Idol.  I will buy your records and I will go to your concerts and I will listen to metal.  Rock on my friend!

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By Shannon Penrod

My cardiologist asked me to start playing the Didgeridoo the other day.  Apparently playing the Didgeridoo helps with sleep apnea.  No, I am not kidding and you have not just stepped into the Twilight Zone.  First let’s start with the basics – Didgeriwho?  Didgeridoo!  The Didgeridoo is an ancient Aboriginal musical instrument some even believe it to be the oldest musical instrument.  It is a long tube, that is slightly crooked.  When you blow a raspberry into it a sound emerges that is somewhere between a twang and buzz, with a little bit of a fart noise mixed in.  It sounds bad but it actually is kind of funky.  Check out Crystal Bowersox singing the Beatles, “Come Together”  with…a Didgeridoo.

It turns out that playing this ancient instrument 3 times a day for fifteen minutes each time promotes circular breathing which has a measurable effect in preventing snoring.  The University of Zurich first did a study that was published in the British Medical Journal detailing their study of 25 patients with moderate to severe sleep apnea.  Half of them were given Didgeridoo lessons and the other half just got put on waiting list and miraculously the Didgeridoo learners showed significant improvement in their sleep apnea scores.

Faced with doing a sleep study and having to be hooked to an expensive c-pap machine every night I decided to give the Didgeridoo a try.  It was certainly more fun to pick out than a c-pap machine, I can tell you that.  It came in the mail yesterday and I couldn’t wait to get it out of the box.  It’s beautiful, but harder to do than it looks.  I got one with a rubber mouthpiece and I’m still trying to get passed the fact that it tastes and smells like I’m kissing a tire.  And as for the circular breathing thing…not as easy as it sounds either.  There are exercises to help you work up to it.  I keep telling my noise to breath in while my mouth is blowing out but so far my noise keeps saying, “I don’t think so.”  Rome was not built in a day.

I plan to keep practicing. I figure my best case scenario is that my snoring will improve and my husband and I will get better rest.  My worst case scenario I have a really cool conversation piece that sits in the corner and waits for guest to oooh and ahhh over it.

 

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By Shannon Penrod

I have a seven year old who is recovering from Autism.  “Recovering from Autism”  this is the phrase that my husband and I adopted about nine months into our journey through Autism.  I didn’t want to call him “autistic”, it sounded final, it sounded harsh, it didn’t honor his spirit.  Like a lot of families we chose to say that “he has autism.”  It’s the truth and it pays homage to the fact that there is more to this little boy than just this one thing.  It was better, but it wasn’t enough.  I love words and I whole heartedly believe in the power of them.  I believe what you think becomes what you say, which becomes what you do and together they comprise how you experience the world.  I wanted to say something that would help our entire family to experience our journey through Autism with dignity and hope, so we began to say that Jem was recovering or actively recovering from Autism.  And yes, the decision to capitalize the “A” is a choice too.  If you live with this in your home you know that it warrants a capital “A”.

Okay, I know I will get mail from adults with Asperger’s and High Functioning Autism who will tell me that Autism is not something you need to recover from.  They like who they are and how they are.  They are offended that there is even talk about needing to recover from Autism. What’s to recover from? Hear me when I say – That is not the Autism I am referring to.  If you can read a blog, get offended by it, and feel the need to respond to it, then you aren’t being held back by Autism.  Unfortunately that isn’t everyone’s story.   My entire goal has been to recover my son from the “Autism” that didn’t allow him to speak, didn’t allow him to communicate or understand the world around him.  I am not trying to remove what is essentially him, his way of looking at the world, his interesting and unique way of seeing things…I prize those things.  I am fighting for him to be able to communicate those things to the world, the way that I see people with Aspergers and High Functioning Autism do.  Imagine the tragedy if Temple Grandin’s mother had not worked tirelessly to help Temple to communicate with the world!  What a tremendous loss.  When I speak of recovering this is what I am referring to.

I don’t know what causes Autism, but five years in there are many things that I do know.

1. It isn’t just Autism, it is Autisms.  Two children can both have a diagnosis and display vastly different symptoms.  If you know one child with Autism you should not assume that other children will be like them.

2.  In the wide range of Autisms there are many people who lead wonderful, productive happy lives.  On the opposite end of the spectrum there are children and adults who are incapable of connecting or communicating at all with the world around them. In between these two groups is where the vast majority of people with Autism fall, individuals who fight on a daily basis to communicate – to understand and to be understood. 

3. There is help for those who want and need it.  In some cases there is even recovery.

4. My personal definition of “Recovery from Autism”? – removing the obstacles which prevent a person from being able to communicate substantively with the world around them, so they can freely interact within the community of their choice.

Simply put, I don’t want “Autism” to stop my son from doing what ever he wants.  If he wants to be friends with a little boy he just met at the playground, I want him to be able to without “Autism” tripping him up.  If he wants to go to MIT and study rocket science, I don’t want stinky old “Autism” to gum up the works.  I want him to be who he is, but who he  is, is not his diagnosis. 

Daily we fight the part of Autism that takes him away from us.  We also fight the perceptions of the world about what they think Autism is and how they think my son should behave.  At the end of the day I don’t have a lot of fight left in me to defend my choice of words.  My son is recovering from Autism, everyday he gets closer to being someone who will walk through the world being able to do what ever he wants.  I’m good with that.

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By Shannon Penrod

I’m not a country music fan, so I don’t even know what Keith Urban sings, but he was on Oprah a couple of weeks ago so I had the opportunity to hear him speak.  They were talking about addiction and what had happened to change his life.  He mentioned that he had asked Nicole Kidman, now his wife, how here heart was and the her reply was, “My heart is open.”  The audience oooohed but I loved what he said.  He said it made him think about his own heart, was it truly open?  I was sitting there thinking the same thing.  If someone asked me how my heart was, the last thing I would have said was that it was open.  I would have talked about my last trip to the cardiologist, that I have these occasional wonky heart beats and that I need to be exercising more.   It wouldn’t even have occurred to me to say my heart is open.  Huh.

Then Oprah, who truly is my fairy godmother because she always manages to show up and say EXACTLY what I need to hear, said something along the lines of  having an open heart is the true definition of spirituality, that what ever your heart is truly open to you will come to you in abundance and whatever your heart is not truly open to will evade you no matter how hard you try to attain it.  Oh, my, my did that statement lead to some personal soul searching at my house!  You know how sometimes you hear something and it’s as if the world has gone into slow motion?  You find yourself leaning forward because the idea is so big that your heart and your head have to get closer to it?  My head became like a mini computer, fact checking the statement for veracity.  I started making a list of all the things my heart is truly open to:  My heart is truly open to loving and being loved by my husband and my son.  Do I have that in abundance?  Yes, I do.   My heart is truly open to helping other families who have children with Autism.  Do I have that in abundance?  Yes, I have that in such abundance that it could be overwhelming, but it isn’t, because….my heart is open to it.  Hmmmmm.  What isn’t my heart completely open to?  Ouch!  A lot! 

If I’m honest there are a lot of things that I say I want, that my heart is at least 90 percent to, but there is a ten percent negativity hold out.  I say I want to be physically fit and I am working out more, but I can’t claim a totally open heart.  I can tell you that I would like to have a million dollars, but as unbelievable as it sounds within five minutes of contemplating winning the lottery I can conjure up stories of people who’ve won the lottery and wish they hadn’t, so is my heart truly open?  The list goes on:  Am I truly open to being thin? Am I truly open to being happy?  Am I truly open to my son recovery from Autism?  You’d think the resounding answer would be “YES!”  But I kept finding little asterisks and tiny hidden pockets of negativity as well as  debilitating shadow beliefs.  Somewhere along the way some one had comforted me about the Autism diagnosis by telling me that you can’t be drafted if you have Autism.  Odd comfort, but any port in a storm, right?

So for that past month I have decided to play with the new toy that my fairy god mother Oprah gave me.  I try to notice when and where my heart is open and acknowledge the abundance.  But I am also noticing when and where my heart is closed and testing its power to remain open.  There are too many ahhhh-hahhh moments to share, but one fun one.  I went to my regularly scheduled cardiology appointment, to monitor my wonky heart beat.  The Dr. was thrilled with my overall progress, but disappointed in my continued reluctance to workout regularly.  In passing he suggested a personal trainer.  Imagine a thousand doors slamming shut simultaneously.  My negative reaction was so instantaneous it shocked even me.  Before I could stop myself I was spewing negativity so quickly I was practically frothing at the mouth, “I can’t afford that!”, “I have no time for that!”  “I’m not in good enough shape to work out with a personal trainer!”  That was just the beginning – but I caught myself – and stopped.  I regrouped.  What would it cost me to be open to the idea of a personal trainer?  Just the idea…could I just be open to the idea?  I looked at the cardiologist and said I would think about it.  I laughed to myself, because the treadmill of negativity was still going 90 miles an hour, but I was open to the idea…Whatever!!

I came home and saw that I had a message on my phone, a message on my cell and an email message all from some one I didn’t recognize.  I listened to the messages, it was a prospective new client who needed an editing job done.  I called him and when we finally spoke I thought it was a practical joke.  He’s a personal trainer.  Not just any personal trainer, a top personal trainer who has trained top people in the white house.  Top people.  He wanted me to edit a promotional piece, but would like to send me his personal work out tapes in hopes that I would work out with them, for the purpose of knowing what we does.  No, I’m not kidding.    My fairy god mother says that whatever your heart is open to comes to you in abundance.  I believe her, maybe you should too.  Maybe be could all try being truly open to world peace.  It couldn’t hurt.

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